I feel like I should be writing something profound or inspiring or life altering. But like almost every other day before today, life kept me busy. There were moments throughout my day though where I thought about my disease, this disease, and all the people outside of myself and my life that are afflicted by it.

For World Diabetes Day, I chose to wear a blue bracelet in honor and in memory of all those living with this disease or living past those that suffered from this disease. And to remind myself that there are many MANY people that share this common, terrible thread.

And somehow this silly little bracelet brought me comfort.

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When my husband took a new job last year, I switched to his insurance plan. It seemed like good coverage and for a non PWD, it would be a good plan. Everything seemed to be going well with this insurance until I got a few calls from Animas telling me that my pump warranty was due to expire and that I should look into upgrading to a newer model. I’ve been through this a few times in the past with different medical plans and thought it would be a similar experience. Wrong. My current insurance only covers up to 2500 per year for Durable Medical Equipment. Bummer is, I require a good deal of coverage for Durable Medical Equipment since all my pump supplies and CGM supplies fall under DME. With the trade in for my current pump, I would still owe Animas just over $1000. I do not have $1000. Plus, I would be maxing out my DME coverage and wouldn’t be able to get any more CGM sensors until next year. This doesn’t seem like the end of the world but my A1c is the lowest it’s ever been and I credit a good deal of this to the use of my Dexcom CGM. It’s not a miracle worker but it’s an amazing tool when used to its full potential – and my blood work proves it.

When I was 14 (just 4 years after diagnosis) my A1c was over 14 and I don’t ever want to go back there again. I’m working my hardest to be as healthy as possible, all the while it seems like the insurance company, Animas (the pump company) and Dexcom (the CGM company) all seem to be working against me. It’s a shame that there is so much profit to be made by taking advantage of the chronically ill people who are simply trying to obtain a healthy existence.

Unfortunately, health seems to favor the lucky and the rich – and as far as health is concerned, I don’t seem to be either of those.

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Last week, my husband and I traveled out to San Francisco for work (ie:1/2 hour of work in exchange for 8 blissful days, paid in full). Said travel required flying to our destination. Now, my husband and I have taken a number of trips over the 8 years we have been together but this was our first time flying together. I discussed with him before hand that I would need to go through a pat down since I was planning on taking my Dexcom CGM and Animas pump with my through the metal detector, as oppose to sending them through the x-ray. He doesn’t like to see me go through anything that might cause undue stress so I simply assured him that this was a normal process and he was okay with all of it.

We arrived at the airport with plenty of time, got our boarding passes and heading over to the security gate. When we got to the front of the line, I inform the TSA officers that I was carrying an insulin pump and CGM and that I didn’t want either of them to be put through the x-ray. Bare with me as I go off topic for a moment – I was certain that my pump could not be exposed to x-ray but I wasn’t sure about the CGM. Since I wasn’t certain, I thought it best to err on the side of caution and not ruin my CGM on the first day of an 8 day vacation on the other side of the country. With that said, the first few officers were very kind and asked me to walk through the metal detector. I obliged, set off the metal detector and was asked to walk through again after emptying my pockets. I declined, informed the officer (again) of my medical devices and was asked to step aside for a pat down.

This is where things go a little awry. I was standing in a sort-of gated spot, in the center of the security check point area but in full view of three gates filled with people waiting to board their flights. As I waited for a female officer, another officer was standing with me and asked what I was carrying. This is our conversation:

TSAO: I’ve seen plenty of pumps before and I know they can’t go through the x-ray but I know the [CGM] monitor can (note of condescension in his voice).

Me: I was told it couldn’t.

TSAO: Well, it can.

Me: Okay, I’m quite certain it can’t.

TSAO: It can. And its way more harmful to [the CGM] to go through the metal detector.

Me: Okay?

TSAO: So you should have just sent it through the x-ray. It’s better for it.

Me: It’s not.

TSAO: It is.

Then he walked away. A female officer approached and directed me to a side area. She talked me through the pat down procedure and asked if I want to proceed in a private area. I’ve had plenty of pat downs before (see:Plane Travel Initiation of a PWD) and they’ve never been too invasive or time-consuming so I declined. I shouldn’t have declined. Talk about invasion of personal space – “Please spread your legs a little further apart ma’am”. What did she think I was hiding up there?!?. Then after the pat down, she tested her gloves for explosive material. Remember when I said I was in full view of three gates full of people? Yeah, at this point I felt like more of a terrorist in their eyes than a person with a medical condition. Then and only then, did she (or anyone for that matter) look over my pump or CGM which took two seconds, was only a visual inspection and didn’t seem very thorough. I walked back over to my husband, he asked if I was okay, I smiled and said I was fine and we proceeded on our way.

It wasn’t until a few day into our trip that I became disappointed and angry. I was angry at the TSA officer that argued with me about MY medical equipment. I was disappointed and angry that I was subject to all that screening but that none of the officers ever really screened the devices that required the additional attention in the first place. And I was angry at this disease – for bringing attention that I didn’t want, for wasting my time and for making me feel like even less of a ‘normal person’ than this stupid disease already does on a daily basis.

The whole process seemed backwards and flawed. I can appreciate that greater security is needed now a days but an eight year old could plan better screening procedures. This won’t keep me from flying again but at least I can expect the best and plan for the worst the next time around.

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For me, diabetes is a huge pain in the ass – literally and figuratively.

In the literal sense, I had to change my infusion set location from my stomach to my, um, side-butt. After weeks of roller coaster numbers on my Dexcom, I finally called the pump company to see if they were having any problems with pump supplies (this has happened before). After an hour on the phone going through all the trouble shooting, the rep asked if I had scar tissue. HA! Of course I do, I’ve been diabetic for over 15 years and have been using the same general body part for injections since diagnosis. So I switched on over to the side-butt and have been seeing some better numbers since.

In the figurative sense, diabetes for me is a constant struggle. Just when I think my bolus and basal rates are right in line, life (or Dee) throws me a curve ball and I get thrown off-balance. During the night, my numbers usually run perfectly between 100 and 120 or so but during the day, my Dexcom screen looks like sideways lightning bolts jumping across the horizon. I’ve been counting carbs and bolusing long before meals but nothing can drag those highs out of the 200’s. Maybe the number trends are new or maybe my Dexcom is just allowing me to see what I wasn’t seeing before. Either way, I’m sick of it! Some days I just want to bury my head in the sand and go back to the days when I was young and didn’t understand the consequences of poor diabetes management. Then I remind myself that my health and my future go hand in hand. Ignoring my health is not an option.

Even though I’ve spent more of my life with Dee than without, I still have a hard time imagining far into my future and all the years in between. I know I’ll have days, weeks or even months of slacking off on my intense attention to Dee – managing such a crap-tastic disease on a daily basis is bound to burn us all out at some point! Someone just be sure to remind me when that day comes that I want a long, healthy(ish) life and my body simply requires a bit more maintenance than most!

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Today feels right. Right to be happy. Right to be working. Right to be diabetic. Right to just BE. It’s raining and dreary but for some reason, today feels like the right day to just be alive. Nothing particularly special happened today, no pivotal moments that I will note for years to come. I am just me today and I feel content with that fact. There are plenty of days in my past and sure to be many in my future where I question myself, including my health, and wish to not be something I am.

But today is not one of those days. Today, I will be me – take it or leave it, I don’t care. For today, I am myself.

As a PWD, it’s important to accept myself, broken pancreas and all. It’s difficult to know that this disease carries with it an inherent risk of complications and so many heavy emotional hurdles. And it’s hard to not focus so far into the future that I forget about the present. So I’ve been trying to focus not on what diabetes won’t let me have but rather on what I can do and can have despite a terrible disease. I’ve accept that Dee is part of life and realized that it is (to a certain extent) a controllable thing. So many other aspects of life are out of my control but this is something I can conquer, even if it is one day at a time.

I knew someday I would be a wife. Someday, I hoped, I would go soaring into my 20’s with my health (and eyes) intact. Someday I would be a productive member of society. All this and so much more, I have accomplished.

And someday I’ll be a mother. Someday I’ll be a grandmother. Someday I’ll travel more. Someday I’ll be a better boss. Someday, I’ll do all the things I’ve dreamed of doing or dreamed of becoming. I’ll work hard and achieve all the things I want in life. But today, I will just be happy with being me.

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This post is supposed to be about the awesome things I’ve done or experienced because of Diabetes. I have to admit, this is a tough one for me. I have finally come to acknowledge Dee and realizing it will be with me forever but it’s hard to give credit to this disease for any accomplishment in my life. With that said…

Lately, my life has revolved around building my career and thoughts of building a family. And Dee has caused me to examine my health and what I expect from this life. Because of that, I’ve learned so much about my own health – more than most people will know about themselves EVER.

And, though I’m not at a loss for tragic moments in my life, Dee offered a perspective on hardship that I may not have realized. Although I wouldn’t wish Diabetes on anyone, I do sometimes wish those I love (and everyone else) could understand the frailty of life and the mundane, asinine things they’ve chosen to focus so much attention on. Life is tough and mine is no tougher than the person’s beside me, despite our vastly different experiences. Sometimes I think I’ve just taken those moments and centered around something better than the problem. We cannot focus on the things we would change or the actions we’ve taken but rather act now and take the bull by the horns to create the reality we wish to live out.

To date, my biggest accomplishment is my drive, determination and happiness that came with tackling life head on. I’m living as though this disease cannot stop me. I laugh like a healthy person, I have a career like a healthy person, I smile as much as a healthy person and will have a happy, successful life like any other healthy person. And sometimes, despite this broken pancreas, I think I’m a lot healthier physically and mentally than those with fully functioning organs. Whether this life I live is because of Dee or despite it, I still don’t know for certain but I will take what I’ve got smiling.

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1. I hate that you require SO much attention. Minutes here and there really add up and that’s time I could be spending with family, or shopping, or at the dentist. Because really, I think I would rather visit the dentist every day if it meant living without YOU.

2. I hate that you stole the last sliver of kid left within me and pushed me full force into adulthood at a far too early age.

3. I hate that you have such an impact on my husband and I’s decision to have a family and I hate that you will be so much a part of that process.

4. I hate that you occupy so, so much of my mind. I wish I could just shut you off and shut you up but that would only mean harder times for myself.

5. I hate that you cost me money – and I’m not just talking about a few bucks here and there. You cost me so much that I don’t even want to add it all up for fears that I might want to spend it all on something else (like central air conditioning for the house or a fancy vacation somewhere).

6. I hate the hurt you cause me. You hurt my fingers, my stomach, my eyes, my heart, my kidneys and pretty much every other organ and body part.

7. I hate that you cause the people that love me to worry about me. I’m responsible and independent but no matter how well I care for myself, they will always have cause for concern with you around.

8. I hate that you’ve stolen a bit of my independence. I know I can do many things but many ignorant people think I cannot and will judge me for being burdened by you – and the world is full of ignorant people.

9. I hate you for keeping me from being a pilot. It doesn’t really matter that I’ve never actually wanted to be a pilot, I just hate that you would keep me from realizing that dream (if it were my dream).

10. I hate that I will be thinking of you ever moment, of every day and night, for the rest of my life. You don’t deserve to be looked after so well but I forever will.

But, Dee, as much as I hate you and everything about you, I am thankful that you choose my body to reside in. Because, if given the choice between watching those I love go through this or living through it myself, I choose me a million times over.